Thursday, November 18, 2010

Day 4 of Chief's rotation on service, and we're back to square one: nothing.

The redo of the Thyroid levels came back normal.

The redo of the ANA panel (Lupus) came back negative.

The spinal tap came back negative.

Vit A and Folate deficiency tests: normal.

Plenty other miscellaneous tests: normal.

There are still some other Vitamin deficiency tests we're waiting on. Maybe they'll be back tomorrow.

But I'm not holding my breath that they will give us any clues. Sorry, but the disappointment happens too often. So yeah, I'm guarding my excitement of any answers tomorrow. I guess I'd prefer to be pleasantly surprised in this instance.

In the meantime, he has upped her Depakote levels to a whopping 120mcg/mL (normal ranges are 50-100). That started this morning. I must admit, I was originally somewhat irritated over the med change. I felt like Chief was doing nothing but masking the symptoms of an underlying problem. And when you mask the symptoms, it's a whole lot easier to ignore the issues. Kinda like, "out of sight, out of mind." Over the past 3+ weeks, there's been a whole lot of that going on (to the doctors' credit, it wasn't intentional), and I'm not interested in any more of it.

But he made a good point: there's nothing wrong with treating symptoms, as long as you also try to fix the underlying cause. For example: it would be terrible negligence to give a kid with a broken arm some morphine for his pain, without resetting the arm. And truly, the opposite would be true as well. The two CAN go hand in hand, and should. But in my frustration, I was tired of seeing her symptoms addressed, and not the "why" of it all for the past month. So, I originally preferred to ignore the symptoms, just let them run their course, and keep them front and center. Because you can't ignore a kid that screams all day, but you can feel a whole lot more comfortable with one who just lays around. And I didn't want her to be ignored or overlooked again.

Why I felt this way, I can't say for sure. I'm most likely paranoid, frustrated, feeling in the dark.

Tired.

And to act like Chief's not doing an insanely incredible job of trying to help Michaela, would be completely unfair and disingenuous of me. He's NOT ignoring the underlying problem. It's just the cause of all this is NOT obvious in any way, shape, or form. Couple that with the fact that he's as much a victim of the system as Michaela and I are, and it looks like we're doing very little. We run labs, and we wait. They come back fine, we run more labs, and we wait.

Every day....hurry up....and wait.

I still feel like we're exactly where we need to be. I still feel like she's getting the best care in the world. Yes, the WORLD. There is not another doctor on this planet that knows Michaela like Chief does. There may be smarter doctors (he would say so himself), or more experienced doctors (take Boston Children's or Johns Hopkins, for example), but there isn't another doctor out there who has the advantage of KNOWING Michaela over the course of 6+ years of difficult-to-treat epilepsy than Chief. He knows the intricacies of HER. The little nuances and the normalcies. I KNOW she's in good hands medically. I have utmost confidence in her care.

But he's right. The symptoms needed to be treated. It was obvious on Thursday the 11th when she had the grand mal seizure clear out of the blue. She was having one of her hissy fits, when she just slumped over. That just doesn't happen. But it was a sign that she was physically growing tired of the constant intensity of the psychosis. I was worried about that. Worried that her body would just start going into constant seizures again---from the stress.

So, I guess he made the right decision. That's why we pay him the big bucks :)

****

I left the unit about 11 to go spend a few minutes with some friends, and grab a bite to eat. I also had been invited to share my story with the board of trustees for the Ronald McDonald House at 12:15 or so.

It was slightly unnerving, standing up in front of all these very nicely dressed, executive types. But it went well, and I was given an ovation :) I had several members come and speak with me personally after the meeting, thanking me for sharing and for giving my input. One lady in particular, has a son with a seizure disorder as well. She mentioned that her family owns a shop in the Huntsville area, and that I should feel free to use her name any time I went there....that they love to adopt people. I guess I've been adopted :)

The man responsible for the Birmingham house, Mr. Max Cooper, came and shook my hand and thanked me for telling my story too. He is very old, and very kind. To be honest, I didn't think Mr. Cooper was still alive. His bust is in the foyer of the house, and I just assumed he had passed away. Well, I was very glad to be wrong. He is a wonderful person with a heart for sick children. It was a pleasure to meet him, and tell him why I'm so appreciative of the House.

****

Come to find out, while I was gone, Michaela had her worst day in a week. She screamed for 3 hours straight, from 11 to 2. She finally knocked out, but when she woke up this afternoon (about 3pm), she went back into a psychotic episode. Here's what she did...

The nurses tell me that she was 3 times louder and more intense during the 3 hour stint earlier. Hard to believe, to be honest. My ears are hurting pretty good from the current session!

I guess, when it comes down to it, there's no masking of the underlying problem going on. Increase of drugs or no....she's still pretty messed up. There's no denying it.

Thursday, November 04, 2010

Of course it all starts with morning rounds. We (Aunt Becky Knox and I--she's been staying with me this week) got there before the neurology team. I was very anxious to see what Michaela was doing after my red flags from yesterday. She was sitting up in bed and eating. A very normal thing to do.

See, cuz here's the deal: Once she starts to show red flags, I lose any sort of trust in the med. Ideally, I would prefer her to go on a drug, and there be NO red flags at any point after she gets on it. Because once flags start, they generally play out into something that gets worse and worse. Almost without fail. Not that there can't be exceptions to the rule, but we just haven't experienced exceptions too often.

So, here I am, totally disillusioned with her new drug regimen, and she looks ok again. Which leads to questions: How long will she be good? Will she crash in three days? Five days? 2 weeks? Or will she just settle down and do better? Or are these red flags the things we just need to live with?

And I know no doctor can answer any of these questions. I'm just telling you what runs through my head.

Remember, I've gone through this before. Even with the very first med she was ever on. We're talking a 10 year history of deciphering red flags. I've gotten pretty accurate at it.

But here comes Dr. Head Honcho. All bright and cheery (he really is a great guy), and says "Hello!" to Michaela, and then proceeds to ask me the question I'm dreading:

"So, are you ready to go home?"

****

Do y'all realize the problem is not going home?

The problem is shifting from one reality to another. There are two realities for me: home and hospital. Because when you're in the hospital, you live here. Even for only a day or two, you're living here. You eat here, shower here, sleep here--it's your immediate life. You have to mentally acclimate yourself to the new surroundings and "family", just so you can feel comfortable and ready for what you need to face.

Keep this in mind as well: it is EASIER to care for her in the hospital. So in that regard, I'd be more UN-comfortable in my home surroundings when she's medically fragile. Especially with a condition like severe epilepsy where there are so many subtle problems. I mean, MOST of her seizures are not visible to the naked eye. When she was in status on Monday morning, she looked like a sluggish, sleepy kid. That's what you would've thought.

What I saw, were unseen SEIZURES.

So, please don't think that I don't want to go home; that I don't want her to get better. No, that's not it. It's just that I don't want to go home again with her "not right." Because it means I could be home with her for maybe a week, before I have to turn around and get reacclimated to the hospital again.

Last time we went home, I didn't readjust to home for over a week.

Physically, I don't think my brain and body can handle that readjustment again...

...without knowing we are staying put for a long time.

****

"No. I don't want to take her home today."

"Why?" says Dr. HH, completely startled.

"Because I'm seeing things that give me the impression she is slipping back into a problem. Last weekend, I saw some of the very same things, and against my better judgement, we were discharged. Within 24 hours, we were readmitted, and could've been back in hospital with a FEW hours if I had pressed the issue and hadn't stayed in town overnight. I DO NOT want to make that mistake again. I need another day to see how this pans out."

I went on to explain to him the red flags I was seeing, as subtle as they were, and he agreed to allow us to stay one more day.

****

I totally agonized over that conversation for the rest of the morning.

Maybe I was making a mountain out of a mole hill. Maybe I was seeing things that just weren't a big deal. Who am I to tell the Chief of Pediatric Neurology at the "14th BEST Children's Hospital for Neurology" (according to the US News and World Report) that his judgement isn't right? To go against his recommendation?

If that doesn't make you feel like you're playing t-ball in the major leagues, nothing will.

And it frustrated me to no end during the day.

I just wanted her to SHOW everyone what I was seeing, you know? I'm so tired of having to analyze every thing she does in order to let the doctors know what's going on. I mean, they never ask HER what's wrong....always me. I have to get this right. But what if I'm wrong? And why does it always feel like I'm seeing things they aren't seeing, until it smacks them in the face??

I finally came to the point where I was just like, "I don't care." So what if we go home. I'll be home for 3 days, and then she'll be unresponsive, and then I'll call Chief and tell him how bad she is, and he'll tell me to up some drug, and then it won't work, and then we'll have to go back in for another 10 days to knock her out of it.

Next verse, same as the first.

A little bit louder, and a little bit worse.

Sigh.

****

But you know what?

Red flags don't lie.

By 7:15 Thursday night, she was psychotic again. Talking to the wall, talking to her arm, making no sense, thrusting her tongue. She went from 0-60 within minutes. It was that quick.

Every red flag I saw proved itself out. They were the precursors to the plunge she took hours later. They may have been subtle and seemingly nothing, but they switched into that awful psychosis that brought us here on Oct 25th.

And by the time it showed up....I would've been home for about 5 hours....if we had left.

****

But in the midst of all these mental battles and frustrations and struggles, there was prayer.

You didn't think I was leaving that out, did you? :)

And yes, I DID pray that she would get worse, and they would know it. Yup. I did. Because like I said, even if I had asked God to make her better and take away the red flags, and He did, that doesn't take away my lack of trust in the meds. Once they break my trust, in my humanity, I can't get that back. I will constantly be on Lava Alert for the problems to rear their ugly head again. It would take months and months of no red flags for me to feel like we're out of the woods.

And truly, that's rough on my mind.

So, it was my preference to get rid of the current med setup NOW, while I was not trusting it, and start over with a drug that wouldn't wave any flags.

I'm not saying it's good thinking, right thinking, solid thinking. It is just MY thinking.

And God knows me. He knows how my brain works, and how I get uptight about these things. So for me to ask Him to let her fail the drug full-force (instead of just "maybe" failing the drug), so we could start over, and THEN pray that the next regimen would be problem-free, isn't something that would phase God. And it really works better for me.

So here's where it gets pretty cool:

Last Sunday night, when Boo and I were at the RMH, and she had gone status, I prayed for 4 things...

1) That the doctors would see the problems I was seeing.

2) That they wouldn't send her home like this without a VERY convincing explanation.

3) That God would allow this hospital visit to be worth something: that we'd get somewhere in furthering the pre-surgical testing (even though I was told it wouldn't happen).

4) That any pre-surgical testing from here on out, would show them what they need to see to give her relief from the seizures.

And the very next morning, God answered the first two.

Yesterday, I prayed the same way--those 4 things, and really believed God would allow us to stay in the saftey of the hospital until she was obviously (to ME) doing well.

So, even though I was frustrated all morning with how no one, but Becky and I, could see those red flags, I still had that prayer in the back of my mind. I also knew God had answered it just a few days before with the other situation. And I also knew that God answering prayer doesn't mean I just sit back and let it all unfold.

Which is why I told Dr. HH that I wasn't going home until Friday.

The doc could've said no, y'all. God could've allowed it to work out that way.

But He didn't, and when it came down to it, God allowed her to show her true colors within 12 hours.

THAT, my friends, is an answer to prayer.

OH! But it gets BETTER!

****

Remember Alyson, the epilepsy surgery coordinator? She came back after Dr. HH and his team finished their rounds. She told me that we were still in a holding pattern as to which test we would do next, because Chief and Dr. E still needed to touch base on it today. She said that she would get back to me on that sometime today (which was yesterday), but that Dr. E was completely booked up until after the first of the year. Did I have any major plans after the first of the year?

(Ummmmm...NO. Are you kidding? I wouldn't be busy and miss this testing for nothing!)

I told her my schedule was free and that the beginning of the year was fine, and that I was just glad we were moving in the right direction.

About 2 hours later, here comes Alyson again.

But she's not alone.

With her is Dr. E, and she wants to talk to me.

(Hello? First of the year? Whoa!!!)

Dr. E. introduces herself, and proceeds to tell me that she's been talking to Chief, and she's been looking at Michaela's records and previous tests. She tells me that she wants to get to know Michaela better, learn more about her and how she works. She wants to set up some testing with a Neuro Psychologist, to show her which parts of her brain control the other parts of her body and her thinking patterns. And she started to talk about the various tests she wanted to do before they could compile all the data, and determine if Boo will be helped by surgery.

Then she goes on to say this: "However, I know you don't want to hear this, but...."

And I'm thinking, She's gonna tell me that she's pretty sure she can't help Boo. That it's a huge long shot.

"....I know you've done a gazillion EEGs, but his way is more precise...."

And I stop her there. "Wait. Excuse me, but are you thinking I don't want to hear you tell me we're doing another EEG?"

"Well, I know you've done so many of them...." (Yeah...4 this month alone!)

"Oh Dr. E! I could care LESS about doing another EEG! I thought you were going to tell me that you don't think you can help Michaela!"

"Oh NO!" she says, "I just didn't think you'd be happy about redoing that test. I don't know that I can help Michaela, but I certainly want to try! Don't worry about that!"

And would you believe, a few moments after this conversation, she told me she cleared her schedule, moved some patients, and is starting that specialized EEG tonight (Thursday night)???

Answer: prayer request #3!!!

****

I couldn't have been more over the moon.

But I know you don't see it yet, the big picture: her putting Michaela in the EEG Monitoring Unit (EMU) for the weekend answered TWO prayer requests: that we wouldn't have to go home before they could see the red flags, AND that we would further the testing.

See, I told you about how Michaela's red flags turned into psychosis, BUT I told you the story out of context.

Dr. E put Michaela in the EMU for testing BEFORE Boo started going psychotic again. So, when we got the news that Michaela was staying the weekend at least, I was still agonizing over going home on Friday morning with her only showing subtle red flags (and therefore potentially coming back to the hospital within a few days).

It felt like I got the reprieve we needed! Yes! I thought, surely, if the red flags are a problem, it'll show up in the next 3 days while we're here for testing!

I felt an immediate wave of relief. A total rush.

It was a double miracle to me. Two answers to prayer, in one fell swoop.

Don't tell me there's no God!

****

And on top of that, while I'm eating lunch and totally still in awe at the change in plans, I notice I have a voice mail.

It's Alyson.

"Mrs. Morris, I just wanted to ask you how your schedule is in Dec. I know you said you have a trip then, but I moved some things around, and got you into the PET test for Dec 13th...."

Oh wow! Wait....call waiting.....

It's Alyson.

"Oh hi Alyson! I was just listening to your voice mail! Dec is fine!"

"Actually, Mrs. Morris, disregard that. I juggled the schedule and I have an opening for Nov 22nd now. Will that work for you?"

(Ummmmm...NO. Are you kidding? I wouldn't be busy and miss this testing for nothing!)

Deja vu!

She then goes on to tell me that she called the Neuro Psychologist to schedule that test with him, but he's booked until January. She said, "That's just not acceptable, so I'm going to have to do some more finagling, and I'll get back to you on that."

Wait, since WHEN is January "not acceptable?" I said January was perfectly fine, but obviously, SOMEONE else doesn't think so.

Wednesday, November 03, 2010

Wednesday morning I got to the hospital in time for the doctor's morning rounds. When I got there, before the doctors arrived, Michaela was awake and talking. She had rediscovered the rubber duckies that the EEG techs gave her (2 in each hand, mind you!), and was very alert. Overall, she looked awesome, and when I looked at the EEG, it looked really good too.

But I was curious to see what her night had been like. Typically, Michaela can have a great EEG during the day, but as soon as she falls asleep, it gets messy. Sometimes the messiness is just the everyday seizures she deals with, and sometimes it's more problematic. I wanted to make sure that we weren't looking at her being so good during the day, when something bad was sneaking up on us during the night. Because it's happened before. Like....what happened this past weekend when we were discharged too soon.

So Dr. Head Honcho (the neurology department chief--not to be confused with our "Chief") came through after a little while, and was so elated that she was awake (the first time he'd seen her not sleeping), that he was just beaming. He confirmed that the EEG had looked awesome during the day, but I wasn't satisfied with that. I told him that I needed to know how it went at night in order to feel as comfortable as he was feeling. He said that was fine, and that he and Chief would look over it as soon as it was uploaded and they could scan through it.

In the meantime, he felt like we had dodged the bullet we were facing on Monday. He decided to move her BACK to the Cube. They put her back on regular food as well (she was only getting g-tube formula). Overall, we were heading in the right direction.

****

But I'll be honest with you....I'm on high alert.

Actually, Chief says I'm on worse than high alert, he calls it "Lava Alert." I'm just really sensitive to every little thing she's doing that might mean she's rejecting the drug. It's not that I'm fussing about "everything," just the signs that I know are typical of rejection. See, when you've been on THE BEST DRUG for a kid with LGS, and you're stuck with using drugs that just aren't supposed to work as well (because "the best drug" made her psycho), you just can't help but be wary. Couple that with the fact that she crashed just.last.weekend and you've got me on Lava Alert.

Of course, I'm keeping it in perspective. I know I'm not in this alone, and I'm not like, overly upset about her condition, good or bad. Really, I keep looking for the bigger picture that God gives me a glimpse of from time to time. All things work for the good, right? Well, so what if I have to walk through a valley in order to get to the mountaintop? At least I have God to walk with me. There's no better Trail Guide.

But as a parent, ESPECIALLY as a parent of a child that cannot speak for herself, I take the role I have as her advocate very seriously. EXTREMELY seriously. I think of it as a highly specialized job, that only I can do. When she isn't well, I get really focused; really driven. I analyze everything. EVERYTHING. I know about all the meds, the doses, the times, the doctors, the potential therapies, the various outcomes. It does not stress me out to handle it all. In fact, it stresses me out to NOT know what's going on.

Chief knows this, and that's why we work well together. I need plans. I need information. I need to feel like part of the team. He's cool with that.

Her life is not in my control, but I will do the best job I can with the control I've been given.

The control I've been trusted with.

So if I feel something is off.....you better believe I'm gonna pay attention. High alert, Lava Alert....call it what you want. I just think I'm doing my job.

****

I tell you all that to tell you this: I'm seeing Red Flags.

Now, we are in unchartered territory with Boo. She keeps throwing curveballs, she keeps the doctors guessing, and she's on drugs she's never been on.

This COULD be good.

Or it could be bad.

Of course I'm praying for the good, but I've been through bad, and I'm ok if we still have to deal with bad. And in all honesty, I'm praying to KNOW when it's good, as opposed to when it's just "sorta good." I don't want to go home, just so she can crash again.

And the red flags could be nothing, ok? Totally nothing. But in case they're not, I'll just keep my guard up so we can catch the problem before it gets really bad.

Or they send me home too early.

****

Back to the nighttime EEG...

Chief came into the Unit about 11am to get me so we could go review the EEG together. Over the years, he's taught me some different patterns and squiggles to look for. I'm no where near an expert, but I can look at them and see various things. He's considered one of the better teachers for the medical students here at Children's, and I know why. He likes to show me how it works. And I love to learn.

So today, we looked at her EEG from last night, the one from Monday (the "very bad one"), and the EEGs from last week (when she was psycho girl).

It was pretty obvious how much BETTER it was last night and yesterday compared to Monday. Amazingly so! Considering how BAD Monday's looked, and just in 1.5 days it was much clearer? It was phenomenal. It wasn't seizure free, mind you, but for Michaela it was very much "normal."

Wow.

Chief was relieved, and said that if it stays that way through Friday, then he thinks we can safely go home. He's going to keep her on continuous EEG monitoring (something we DIDN'T do last weekend--and it backfired on us) so we can see if she starts to slip out of the good pattern.

This is a comfort to me.

That way, even if the red flags bother me, I can at least be assured that the EEG is ok. Sometimes red flags are just a side effect of new drugs. Sometimes, she's just being a kid. But no matter what, we will SEE whether those flags need attention. Last weekend, I had to go strictly by gut, and trying to convince a new doctor that your gut thinks something is wrong, is very stressful.

But this plan feels good. Stress is minimal :)

****

In other news, the coordinator for epilepsy surgery came up to meet me today. There are 3 specialized neurologists here at Children's that are in charge of surgery, called "Epileptologists." I've met one before, the other 2 are new. What happens, is Chief still micro-manages her overall care, but the epileptologists are directly involved with anything leading to surgery. In particular, the tests we still need to do.

So Alyson is the coordinator for that. She schedules everything, and is the direct patient touch-point for all questions and technicalities once a patient has been referred for surgery. She came with her card and told me to call or email whenever I want, or have a question (poor girl, she has NO CLUE what I will do with that kind of privilege!). She then gave me a card with a schedule for the first round of tests.

Ummmmm.....the FIRST round? We've already done that!

I proceeded to inform her that the Epileptologist (for future reference, "Dr. E") she had paired us with, has already consulted on the first round of tests, and told Chief to go forward with the next step....which he did. Alyson seemed pretty confused. I went on to tell her about the MRI we got at the beginning of Oct, and how it was specifically done within Dr. E's recommendations.

She started to argue with me some more, when Chief walked in.

Good timing!

See, I respect Alyson's position in the department, and what she needs to accomplish, but I was NOT willing to go back and redo two rounds of tests JUST because she was out of the loop. She was so on autopilot, that she couldn't immediately handle that she hadn't been included in the original game plan. She just kept going with her normal Standard Operating Procedure...no matter what I said (and I knew my stuff, ok?).

But Chief took over and said he would clear everything up. He wasn't sure which test Dr. E would want to do next: the SPECT Chief thought we'd do, or the PET, another test in the series. He said he would talk to Dr. E, and then Alyson would get back to me.

She called later, and will come see us tomorrow morning. Praying that the next test (whatever it is) is done soon, and that we get further down the 4-6 month timeline. Just being in Dr. E's rotation, is an exciting development for us!

And proceeding with this surgery option, would be SOOO worth the hospital admission.

Yours Truly.....

I am a 34 year old wife and mom of 6. This journal was started to chronicle our adventures with our daughter and the treatment of her rare epilepsy. However, while it was written, it became a journal of our everyday lives as well. Hope you laugh, cry, and think as you read....I sure did :)